Busy Week

This week was a very busy one for us.  Levi had his first long trip.  We went to Kentucky to visit my sister and her family.  He was such a little trooper on the drive, didn't fuss at all!  He was interested in all the different things at Casey's house, but sometimes the stimulation was just too much for him.  I didn't count, but I'm sure he had more than the normal amount of seizures.  We had a great time!!  Levi must have been worn out, because he slept all the way back home!  The weekend was more relaxing for him.  I think he's still trying to get used to the new med increase.  He's becoming more alert, but he's still pretty floppy.  The last couple days he's had a lot of smiles for us, though, which is always wonderful to see!  The weather has been so nice, we've been taking walks.  He loves the sun!  We're looking forward to a lot of time spent outside this week!

Fast Day Five

It was a strange day.  Last night Levi was awake for a couple hours during which he had a boatload of seizures. He had a lot of the extra long ticks today, which is unusual for him.  The ticks have gone down from around 10-12 a day before Clobazam, to about 4 a day now.  He was really sleepy, and took a very long afternoon nap.  He woke up for supper, and the seizures started right in. Both types were coming one right after the other.  Of course I didn't like to see him go through that, but I wasn't concerned.  I believe this is the seizure finale, somewhat like a fireworks finale.  A sudden burst of activity that draws a lot of attention, but when it's done, there's peace and quiet.  We've been fasting and praying all week for an end to the seizures.  We implemented the new med dosages at dinnertime.  Since then we have not seen any seizures!  I'm looking forward to watching the Lord work!  Thanks for all the prayer and support!! 

Fast Day Four

We had an appointment with the GI doctor.  He said that although Levi is below the curve and small for his age, he is following it for both height and weight, which is excellent.  We will be making an appointment to see a nutritionist for ideas on how to increase his calorie intake, etc.  After the appointment we had dinner at a Mongolian BBQ place.  It was our first time there, and definitely will not be our last!  Levi chilled out while we ate, and flirted with the waitress.  He cried for his dinner yet again, and ate pretty well.  He woke up at 1:00 this morning and was up for two hours.  He was having a large amount of both types of seizures.  This was a very unusual instance.  I didn't let it bother me.  I really believe it was an attack from the enemy.  My mom and I have been fasting and praying all week, so I just chalked it up to an attack.  I know Jesus has it covered!  Levi has been so tired today, probably from all the seizure activity.  We go up on Clobazam to 10 mg tonight, and down to 5 ml (24 mg) of Phenobarbital.  Please keep Levi in your prayers!

Fast Day Three

What a beautiful day it was!  Mom and I took Levi for a walk.  He threw his little head back and gloried in the feel of the sun on his face.  It's too cute!  He loves the sun, whether we are outside, or just walking past a window, he's definitely "one with the sun" like Moga. He was moving his legs a lot, which is encouraging, and even doing more with his arms.  It's not that he can't move them, he just usually doesn't.  This morning when he woke up, he spent a long time stretching his legs and making adorable contented sounds.  His appetite is still excellent!  Seizures are still very short!  All in all, it was another wonderful day!

Fasting Day Two

Levi was awake and alert all day yesterday, except for a small morning nap.  His head and trunk control continued to be excellent, and he seemed very interested in looking at the toys dangling over his chair. The seizures were still very short in duration.  For the third night in a row, he cried for his supper!  He was a bit fussy while he ate, but by that time I think he was exhausted!  He ate just about everything.  Then he had a warm bath and cuddled in Daddy's lap, where he drifted off to sleep.  He had no teething pain, and again no seizures after supper!  He slept until we were ready for bed, but woke up when I put him in the crib.  He was content to lay there, went back to sleep on his own, and slept all night long.  It really was a wonderful day!

Having fun bouncing on Aunt Mishy's lap.

Watching his fishies.

All dressed up :)

Fast Day One

The first day of the fast brought some wonderful blessings!  Last night, Levi cried for his supper for the second night in a row!  This is huge because Levi has not really been hungry since May when he started taking Topamax.  He ate his entire meal, and every drop of his bottle!  This is probably the first time he's ever done that at dinnertime.  His head and trunk control have been awesome as well.  I picked him up from his crib this morning and he had excellent control, there was not a sign of floppiness!  The number of seizures was still in the same range, but they are very light and quick, and we didn't see any after he ate supper last night!  Thank you, Lord, for healing him!  My prayer is that we are walking out the final stages and he will be seizure free very soon!


Mar 11:22  Jesus said to them, "Have faith in God! Truly I tell you, if anyone says to this mountain, 'Be lifted up and thrown into the sea,' if he doesn't doubt in his heart but believes that what he says will happen, it will be done for him. That is why I tell you, whatever you ask for in prayer, believe that you have received it and it will be yours. 

Fasting and Praying for Seizure Freedom!

I've been feeling the need for another fast.  Last May was a difficult month.  We were at Cardinal Glennon frequently, receiving new diagnosis like Infantile Spasms and Hip Dysplasia. On June 1 we began a fast, and that very day we received our first piece of good news.  It only got better from there.  I know that God honors fasting.

This coming Saturday marks Levi's next med change (increase Clobazam, decrease Phenobarbital), so I thought it appropriate to begin fasting today through Friday and praying for seizure freedom.  I looked back at the seizure log, and it seems the seizure count was around 30-50 a day, give or take, before starting Clobazam, and they have remained there until present.  So although we have not seen a lessening, at least we have not seen an increase.  Clobazam is supposed to be very effective at treating both types of seizures that Levi suffers from, and I'm praying and believing that the Lord will use this to heal him completely!  We still have 2 increases before we reach the goal dose.

Beginning today until Friday, I will be fasting meat.  I ask that, if God puts it on your heart, to join me in fasting and praying this week.  Fasting can be from one thing or many things, and does not have to be food.  Some examples: coffee, chocolate, facebook, video games...anything that is difficult to give up.  Even if you decide not to fast, please join us in praying for complete seizure freedom. When we all come together in prayer, the Lord is in our midst! (Matthew 18:20 - For where two or three come together in my name, there am I with them.")

Thank you so much for your thoughts and prayers for Levi!  Every one is greatly appreciated, and we will be praying special blessings on anyone who says even the smallest prayer for our baby!  God Bless!

And....We're Back to Formula

So the switch to regular milk did not go as smoothly as planned.  After Levi had a bottle of only milk, he had a super bad night.  He was teething, but it was so extreme I thought maybe his tummy was bothering him, too, so we went back to half formula, half milk, and rice cereal in every bottle.  Over the past 2 to 3 days he has been drinking less and less.  He would start to drink, then make "icky face" and stop drinking.  I couldn't get him to take more than 2 ounces at lunch today.  I thought maybe he had a sore throat, but he's been eating solid food very well.  The nightly teething has been worse each night as well.  So for dinner I made just formula and rice cereal.  No icky face!  No problem drinking!  He downed almost the whole bottle!  So, we will continue with formula for a while before trying milk again.  I'm glad it was such a simple fix!

Many Changes

Levi has tolerated the change from formula to milk very well.  We began by adding 1/2 ounce of milk to his formula, and increased from there.  Today at lunch he had his first bottle of only milk, with rice cereal, and did very well, so he had all milk at dinner as well.  So far so good!  In a week or so I will begin weaning the rice cereal from his bottles.  It will be very nice to be able to buy regular nipples, rather than the Y cut silicone nipples that stretched out so fast, or cutting bigger holes in regular nipples.

On Saturday night we increased Clobazam from 5 mg to 7.5 mg, and decreased Phenobarbital from 7 ml down to 6.  That first night he was already totally wiped out by the time he finished eating, and took a long nap, which of course ended when I was ready to go to bed. lol  He's taking long morning naps again, but this afternoon he was very bright eyed and smiley.  Pretty floppy, but definitely happy and alert!  It takes a few days for his body to get used to the new dosage.

Last Friday our PT brought a gait trainer, which is an adaptive walker.  Patrick calls it his Mustang.  I've been excited about this because Levi is doing very well walking with me.  His legs are ready to learn, but his upper body is still pretty floppy.  He likes the gait trainer!  We have it set to lean forward a bit.  He is standing up and leaning over a large tray, which we put toys or swirly mats for vision therapy.  The most amazing thing is that it's really helping his head control.  Instead of letting his head loll forward, he is picking it up and looking around!

That brings us up to date on all the changes going on right now.  I'm excited to see how the seizures and his alertness are affected by this latest med change, and the things he will learn from the gait trainer.  Please continue to keep him in your prayers!

Today Levi had his 12 month checkup.  He's a bit behind because he was sick during his original well checkup, so we had to use it for a sick visit.  He was in a good mood today!  The nurse kept commenting on how happy he was.  We got to chat with my dear friend Pam for a while, which was wonderful.  Since he spiked such a high fever with some seizure activity on the last round of shots, the neurologist wants him to have only 1-2 at a time, and I feel much more comfortable with only 1, so he had the MMR (measles, mumps, rubella).  He fussed only a little bit.  The nurse was hugely impressed. Then the poor little guy had to have some blood drawn.  Again, only slight fussing.  He got his very first sticker for being a good boy at the doctor's office!  A big picture of (who else??) Lightning McQueen!  Way to go, Levi!

The pediatrician says he can switch from formula to regular milk, as long as the GI doctor doesn't have any reservations about it.  She is checking his electrolytes and nutrition because she's concerned about slow weight gain.  I'm not too concerned.  Miranda was always a tiny little thing.  Also, Levi is on so much medication it's a wonder he eats as well as he does!  So we will also be checking with the GI doctor about what types of food would be best for him nutritionally, that will help him gain weight.

A few days ago Levi had his very first milk and cookies.  I soaked vanilla wafers in a bowl of milk and chopped it up like cereal.  He wasn't too fond of it.  I'm not sure if it was the cold temperature, the taste of the milk, or all of the above.  The pictures below are of this experience.

The seizures remain about the same.  Some days are light, some are heavy.  One day he didn't have any seizures until two hours after he woke up.  That was a first!  He is still sleepy, but doesn't sleep as much through the day, and is definitely more alert in the afternoon.  Saturday we will increase Clobazam and decrease Phenobarbital again.  Hopefully we will see very positive results!!